Cervical stenosis

[Stoned53]

I have cervical stenosis c3 -c7 which seems according to my consultant to have plateaued out (no deterioration for a number of years) I have different pains throughout my body for which I was sent to a rheumatologist suspected fibromyalgia. He told me to talk my orthopaedic surgeon into doing the operation on my spine then see how I feel. Has anyone else had this sort of attitude from consultants?

[Roo1972]

I paid to see an orthopaedic surgeon who said my stenosis wasn't the cause of my pain and I needed a neuro consult. Neuro have bounced my GPs referral - will find out on Monday why! At the moment fibro is often a game of 'pass the hot potato' and you just need to get a little arsey (though not rude), stand your ground and don't agree to surgery unless the orthopedic surgeon feels that is in your best interests and all other options have been exhausted.

[Stoned53 in reply to Roo1972]

Thanks very much I feel the same way

[liz123 in reply to Stoned53]

I have Fibro diagnosed in 2009 but for the last 10 years I have suffered with up to 15/16 migraines a month and finally had an MRI scan that showed I had a cervical stenosis caused by a left sided rupture at C5/6 . I suffered also with tingling of the nerves down my arm to my fingers . I saw a Neurosurgeon privately as the waiting list was 16 months and had an ACDF (anterior cervical disc and Fusion ) 8 weeks ago and can report complete success. My migraines are now at 2 a month and the tingling has gone. Obviously I still get the many symptoms of Fibro but that was one problem out of the way. Good luck

[Stoned53 in reply to liz123]

Thanks

[Zidowa]

Hi, Is it ACDF you are talking about ? I have had this done but also have fibro, i am glad I had it done as it has relieved some of the pain but fibro still causes alot of problems.

[liz123 in reply to Zidowa]

Yes it is ACDF and as I said I no longer gave as many migraines although I do get a few. Fibro has multi symptoms but but was such a relief to get at least the migraines reduced .

[Gasp0de]

Please think carefully and make sure an operation is right for you agreeing. I've an ACDF between C5/C6 and C6/C7 and my pain has been so much worse since having it done. I however had no choice as was told if I didn't have it I would end up paralysed as I had bone pushing into my spinal cord. Wishing you luck xx

[Stoned53 in reply to Gasp0de]

I have heard so many say the same as you, I feel lucky that I haven’t had any deterioration for a few years. Im waiting for another mri scan hopefully my condition will not have progressed.

[Veiga]

Hi I have cervical stenosis in discs C3 to C7 and saw a Neurosurgeon privately ( on the advice of my GP) after waiting 6 months on NHS for a Neurosurgical consultation which lasted all of 10 mins including walking 100 metres to and from the consulting room. This ignoramus of a Doctor repeatedly said ' you need pain management' when I'd been struggling to do my job and already tried numerous therapies( mindfulness, a pain management course, physio, and meds including opiates, amytriptaline , nortryptaline , antidepressants etc all of which made me feel like a zombie and unsafe to drive ( I was a Community Mental health Nurse for 37 years )I paid £250 to see another neurosurgeon, who worked at the same hospital ( Walton Centre, Liverpool)as the first guy. I got an appt in days and he looked at previous mris, examined me and diagnosed bilateral cervical ribs there and then.

He put me on his NHS list for surgery as I did not have private health insurance,.

so although I have the cervical stenosis it was an unrelated issue that was causing the pain weakness, and feeling of cold water running down my right arm that was compromising my day to day life and work.

I've been seen by numerous rheumatologists in the years since 2006 when osteoarthritis was first diagnosed and all they have ever offered was advice to give up my job, medications, -- drugs like pregabalin and gabapentin that I tried but am not prepared to take for personal reasons., having seen the effects on a close family member.

I had my right cervical rib rejected and did not opt for surgery in the left side as it wasn't causing the degree of problems as the right side.

The operation hasn't been totally successful but it has certainly improved my symptoms 50%.

I eventually had to reduce my work hours then retire but am determined to live as active a life as possible despite daily pain due to the osteo and coccydynia .

I wish you all the best with your treatment journey and hope you find some resolution to your pain xx

[Lupusrelative in reply to Veiga]

Also taking pregabalin but not sure about it. Not sure how to send a private message as I would really appreciate your thoughts on this drug. Also having problems with C4-C5 and C5-C6. Doctor wants to do some kind of injection. Seeing her next week.

[Muffin888]

Cervical stenosis now seen as cause of fibromyalgia cfs. I am in process of requesting cervical surgery from gp

[Charliebear1234]

Hi stoned53 defo not get second third forth opinion before hand

[Midori]

All specialists are not like GPs; they concentrate almost entirely on their specific subject, so they prefer to send you on to another one if they think their speciality would be better for your condition.

Cheers Midori

[Confused01]

Hi,

I was diagnosed with cervical stenosis years ago, last year issues with have increased considerably.

In between I was diagnosed with Chronic Fatigue Syndrome and after Fibromyalgia, which to be honest I felt a bit of a fob off and consistently said so as my spine and more were causing issues before.

I waited over a year to get to pain clinic and fobbed off..again.

Recent mri now shows 4 problematic cervical areas, including some nerve compression and pressure canal narrowing. Also indenting into anterior surface of spinal cord.

In constant pain, neck movement restricted by pain, neck gets stuck in one position (painful loud unlocking), numb arm, nerve pain in limbs and a lot of other stuff.

I also experience sudden very severe episodes where I literally cannot support myself physically, not even my head, affecting vision, extreme sweating. The extreme last hours then slowly subsides into days of poor mobility, never 100% back to normal physically.

Told that until I have an episode that doesn’t resolve, in other words remain physical useless, I won’t get help 😢.

I am getting nowhere with getting help 😟.

Any advice? Anywhere having same experiences?